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My life with a spinal cord injury My name is Lorenzo and I am a 27-year-old boy with a spinal cord injury. I had a motorbike accident at the age of 15, fracturing two vertebrae. My hospital stay, given the young age, was very short. I have a very strong character that allowed me not to think too much about how it could have changed my life. From the incident onwards I continued to live my life normally as I did before without causing problems for my situation. Today, after 12 years, I continue to live normally trying to overcome any problem that presents itself in my path and live life to its' fullest every day !!

Enjoy the show! Hello, Everyone! I am Erez Gaon, and I wanted to share with you an enjoyable experience and recommend you see the play "Wonder" of the Elmina Theater in Tel Aviv, Israel. The play is about a special child who learns to cope with ordinary children. The story is very similar to my personal story. I highly recommend you to watch and bring as many friends and children as you can for the show. Sending you all big hugs! בואו להנות מהצגת התיאטרון ״פלא״ בהפקת תיאטרון אלמינא שלום לכולם כאן ארז גאון, רציתי לשתף אתכם בחוויה מהנה ולהמליץ לכם על ההצגה ״פלא״ של תיאטרון אלמינא. ההצגה מספרת את הסיפור של ילד מיוחד אשר מתמודד מול ילדים רגילים והסיפור מאד דומה לסיפור האישי שלי. אני ממליץ לכם מאד לבוא לצפות ולהזמין כמה שיותר חברים וילדים לראות את ההצגה. חיבוק גדול ממני ארז

Rollingonfaith Hi, my name is Alex and I’m 24 years old. I have a disability called Cerebral Palsy, which is a birth injury caused by labor and delivery complications & lack of oxygen to my brain. CP affects my motor skills and I slur my words. God has truly blessed my life with his favor. Growing up I always asked him why did he allow this to happen to me. When I turned 20, God placed on my heart to share The gospel of Jesus Christ with others. Especially to people with disabilities, so I’ve created a t-shirt ministry called Rollingonfaith to give a voice to people who have disabilities and who struggle to speak. My overall goal is to lead people to JESUS! #rollingonfaith

The Unknown of Hydrocephalus When I was diagnosed with hydrocephalus at four months old no one knew what to expect. Many with the condition are not able to live independently. Even more, have severe learning disabilities. And the only treatment option for hydrocephalus is brain surgery. Some feared I would not be able to keep up with my peers, let alone excel. Some have pre-judged my abilities because of my diagnosis, but here I am. I was valedictorian of my high school class, graduated summa cum laude with a bachelor’s degree in Molecular Biology, and am currently in a Medical Scientist Training Program working on both an MD and PhD. Brain Surgeries and Dreams A lot went into my decision to become a doctor and do research, but it really came down to one fact my neurosurgeon told me my junior year of high school, “50% of shunts fail within two years”. I had just found out I needed another brain surgery, my seventh surgery, fourth neurosurgery, at that point. Doctors, CT scans and surgeries had always been a part of my life, but it was not until that moment that I realized how truly lucky I had been on my hydrocephalus journey and how unreliable the current treatments for hydrocephalus are. In the last three years, while in graduate school, I've undergone 10 more hydrocephalus-related neurosurgeries, including VP shunt revisions, intracranial pressure monitoring and an endoscopic third ventriculostomy (ETV). My once frequent migraines are now daily, but I am learning a new normal, managing and working through the pain. I know I will need more brain surgeries and will probably never be headache-free, but I am determined not to let it keep me from my dreams. I love getting to help others facing health challenges, through biomedical research, as a doctor in training and by providing support to others in the hydrocephalus community through my volunteer work with the Hydrocephalus Association. Living with hydrocephalus has not been easy, but through it all I have gained invaluable experiences that have helped me realize my dreams and that will help me to be a better doctor and scientist. I truly believe that there is a purpose behind all the pain. I can see how my struggles and seeming disabilities helped me get to where I am today. They enabled me to hone my problem-solving skills, taught me to ask for what I need, and inspired me to use my talents to help others facing health challenges. Be Your Own Mapmaker We never know what the future holds. Everyone's journey is different. But it is important to remember that we are our own mapmaker on this journey of a lifetime. While illness may put difficult terrain and detours in our path, sometimes those are the very things that guide us to the most amazing destinations.

My Life In A Nutshell I was born with a rare genetical disorder called Osteogenesis Imperfecta (OI). It is commonly known as Brittle Bone Disease. There are many types of OI but I have the most severe form of it. When I was born, I had some complications. I was born with multiple fractures throughout my body (some fractures had already healed in my mother’s womb itself). But the X-ray basically showed this whole messed up structure. As if someone had beaten me up into pieces. Besides that, my lungs were also underdeveloped and thus, I had some serious respiratory problems. I was in the ICU, in the incubator, for 22 days, before the doctors told my parents they could take me home to make me feel comfortable and prepare for the worst. However, here I am today, 26 years old and still very much alive. Throughout my life thus far, I’ve had about a few minor fractures and two major ones which I can remember very vividly. When I have an episode of fracture (usually in my legs), I will end up being bedridden and out of school for a few months as recovery takes longer than usual for me. That being said, due to the fact of being extra cautious and careful, the number of fractures I’ve had can be said to be a lot lesser as compared to some of the other OI patients in general. Furthermore, besides fractures, I had to make numerous hospital visits throughout my younger days due to the respiratory issues I had had to endure. A slight cough and cold would eventually get me admitted to the hospital. Getting a place in a regular school wasn’t a walk in the park either. My mom had to fight for my rights to an education and eventually to a school that would accept me. She then spent the next 11 years accompanying me to school every single day. Navigating Life with Osteogenesis Imperfecta In school, I didn’t have a particularly smooth ride either. From the aches and pains, I had to endure from the long hours of sitting, to the bullying and isolation from my surrounding peers, to just being alone and lonely most of the time. The one thing that kept me going was my mother’s love & sacrifices. And of course, my strong belief in God & the Bahá’í Faith. Fast forward, by the Grace of God, I graduated from school with exceptionally flying colors and made my way to university, completed my undergraduate degree in Psychology, and now work from home as an HR Executive whilst attempting to allocate some time to give back to society in the form of advocacy and modeling. My only hope is to keep serving and giving back to society as much as I possibly can, for as long as I can. I strongly feel that if you place service as the very core of all that you do, you can’t go wrong! :) Learn more about me on my blog! Looking forward to seeing you: https://thebeautifullyimperfectnut.com! Please do not hesitate to reach out with any questions or comments. Thank you!

We want to enrich the everyday life through wider social family networks! The experience of becoming a mother to a child born with Down syndrome made me, Jenny start the initiative www.ournormal.org/en - a platform where families easily can connect with other families with similar experiences. To give each other support, make new friends and build wider social family networks. The platform welcomes families of children with different types of disabilities - simply because sometimes the needs are different but sometimes they can also be pretty similar. And wouldn't it be cool to get a new connection in another city for example, if you are planning a family trip for your vacation? The platform is run by a non-profit organization, started by parents of children with different disabilities, and special abilities! So far most of our families are based in Scandinavia, but we welcome families from other parts of the world as well - and would love to also see international connections start happening through Our Normal! You can also read more about me, my family and some personal reflections on my blog "Our Normal Family's story" https://ournormalfamilystory.wordpress.com/. I hope that you want to check out Our Normal, add a family profile and start connecting with other families - like ours for example :) Please feel free to get in touch and share your thoughts or comments with me at any time! (Header photo was taken by Sven Andersson)

My Story Living Legally Blind Hey! My name is Emilee and I’m legally blind! I was born with a retinal disease called cone dystrophy, as well as Nystagmus (shaking eyes). Plus, on top of that I’m super light sensitive, so basically, my sunglasses are my best friend (all 10 pairs of them). My disability has given me a chance to find a love of public speaking and sharing my story. I also coach gymnastics, do curling, drawing, and love doing what any other teen does, which also includes traveling and exploring the world around me. I am on a Youth Council, run agoalball club at my school, created a social media movement with my sister called Tru Faces, and work with a disability council in my area. I educate others to break the stigma and change stereotypes or misconceptions about blindness. So no I don’t wear my sunglasses because I'm on drugs or recovering from a concussion, and no my cane is not a stick, numb chucks and certainly not a metal detector! I also do have some remaining vision. In fact, did you know that 90% of blind people still have some remaining vision? Some people see a disability as a bad thing but I love mine. ️

Who Needs Accessibility? There is a certain stereotype that pertains to something being "accessible". When most peole think of accessibility they think wheelchiars, which is important but does not capture the big picture, there are more people who are effected by accessibility then just people in wheelchairs and walkers. Yes, ramps and automatic doors are great, but other disabilities need to be included such as visually impared and hearing impaired persons. How To Accommodate For The Visually Impaired Making a public facility accessible for someone with sight loss can be so much easier then it is cut out to be, all you have to do is add braille to your signs! Adding braille allows those who are blind to navigate your facility better. Also, not all people who are visually impaired read braille, so you should also make sure that your signs are fairly large. This can also help elders with less visual acuity. Another idea if you really want to go all out is that if you are a public place that a blind person may encounter, like a grocery store or mall, you could also make sure your employees know how to handle someone with vision loss. If they have to describe where something says "It is to Your left" instead of "It's over there" or even teach sighted guide (but that is not necessary). plus, as a general rule, make sure that there are no trip hazards and chairs are pushed in to make your facility easier to navigate. Accommodating For Someone With Hearing Loss Accommodating for someone with hearing loss can be just as easy as accommodating for sight loss. If you are dealing with displays including video, make sure that you have subtitles that can be read. As well, it is not a bad idea to have a member of your staff who knows sign language to make it easier to communicate with your customer.

Fashion Model to Wheelchair Model When I was 14 years old, I visited India, my native country, for a month. After coming back I suspect that I had gotten malaria. I had all the symptoms, and because of that I could barely get out of bed. Sometime in August, I was supposed to sign a contract because I was chosen to be the brand ambassador of a leading soft drink company in the United States; but that same day, my symptoms had worsened. I had started hallucinating, I couldn’t walk properly, and I couldn’t pee anymore. My parents rushed me to the emergency room where I had a seizure that led to respiratory and cardiac arrest, which eventually led to me being declared dead for 7 minutes. The average human body can survive without oxygen to the brain for 3-5 minutes. 7 minutes was unheard of in 2006. The doctors used a defibrillator and shocked my heart back after 3 attempts, but couldn’t get my breathing back. I was on a ventilator and the next day I went into a coma for a total of 23 days. Never Giving Up Hope The doctors had given up hope, but my parent’s hadn’t. The doctors wanted my mom and dad to pull the plug of my ventilator, but my mom improvised and told them that my 15th birthday was coming up on the 29th of September and that she wanted to celebrate it, one last time. She got her wish. The Dean of Medicine allowed the request, but he made my parents sign a consent form which stated that if nothing ‘miraculous’ happened on my birthday, he would personally pull the plug from my ventilator, basically killing me. When it was time for my birthday, I had about 75 people surrounding my bed and at 3:05 pm, the exact time that I was born, my dad took my hand and cut the cake. As soon as he did that, I opened my eyes. Everyone was screaming, the doctors did an evaluation, and they hugged my parents saying that I had survived. After coming out of my coma and being discharged home, I tried contacting some old friends and family, but they disregarded me. They insulted me, which led to depression and self-harm. It was so bad that I had to be hospitalized. My parents and therapist really helped me out of that place. Breaking Barriers In 2008 I moved to Mumbai, India. I moved from the USA to Mumbai to try unconventional treatments. I’d use the train for transportation, but unfortunately, I was molested by the luggage porters while trying to board the train on three separate occasions. In 2014, I participated in the Miss Wheelchair India pageant where I won second place. I started talking about disability awareness in my community because India is a fairly inaccessible country. In 2017, I started a campaign called #MyTrainToo for accessible Indian Railways. I didn’t want anyone else to suffer the embarrassment of being molested just because of inaccessibility. Through my campaign, I’ve made 6 stations in the southern region of India wheelchair accessible. Simultaneously, I started working for Enable Travel as their Youth Ambassador. Enable Travel is India’s Premier Accessible Holiday Specialist, where we encourage the disabled to travel. It’s for the disabled, by the disabled. With Enable Travel, we started a campaign called #RampMyRestaurant to make restaurants in India accessible for those with disabilities. I’m also a motivational speaker, a model, a writer, a disability rights activist, and an aspiring model. I want to break the barriers by entering mainstream media because I believe normalcy is subjective. I believe we’re all normal and we’re all disabled in some way, we just fail to acknowledge it.

Kaylee's Life Undiagnosed Hi, my name is Kristina and this is my daughter Kaylee. She is 7 years old and has a rare unknown bone condition that results in easily broken bones from little to sometimes even no injury and causes her daily pain. Kaylee uses a wheelchair daily, has AFO leg braces, a TSLO back brace and uses a walker on occasion as needed - she is able to walk short distances unassisted as her pain permits though she primarily crawls at home. We have seen several different types of specialists and Kaylee has gone through numerous forms of tests including two different types of genetic testing yielding no additional answers. We’ve been told it’s possible she may be the first with her specific type of bone disorder and until another person is documented like her, her underlying condition may remain undiagnosed. Not having any type of path to follow can be really difficult. Despite her struggles and the many unknowns though, she is an amazingly strong little girl that radiates pure joy. Not a day goes by that our house isn’t filled with laughter. In an effort to raise awareness and in hoping for a diagnosis, we openly share our family journey and adventures on social media. We try our best to mostly focus on the positive and embrace life while providing Kaylee with the best childhood possible.

Challenge Yourself “I don’t know if you have to live for sports, like me; but What I do know is that you can’t live without it.” I’m Mahmoud Youssuf, 28 years old, from Egypt. I started practicing Kung fu when I was five. I won many championships and became a coach. In 2010, I had a terrible accident; our vehicle fell off a bridge, and I suffered a spinal cord injury and became a wheelchair user. After two years of physiotherapy, I left the hospital and started working from home and decided to train using simple equipment with a low budget. I faced many challenges, but my passion for sports helped me overcome both psychological and physical struggles. I’m now a Professional Wheelchair Tennis player, a Motivational Speaker, a Personal Trainer, and a certified trainer for the Disability Equality Training. I’m also working at a multinational company in the HR department. I’m an ambassador for Helm Egypt Foundation (that promotes inclusion for persons with disability) and participated in many of their events and awareness campaigns. I was also a contestant in an online program called Sadeem (the biggest competition for content creators in the Middle East). Every day can be a challenge, but the hardest challenge is to challenge yourself!

Brayden’s Battle To this day, I still remember looking over at Brayden’s crib and seeing him blue and limp. Brayden’s father and I didn’t think twice before rushing him to the hospital. After running a series of tests, we soon found out that he was having seizures and the ER staff was quick to call in the neurologist and stabilize Brayden. Shortly after being hooked up for an EEG, Brayden at only three months old, was diagnosed with Infantile Spasms Brayden’s doctor and his team came up with a treatment plan and only two weeks in, Brayden started having complications and failed the treatment. Our next option was the ketogenic diet, which then again failed him. Doctors again came up with a new treatment plan, and finally after many months, this treatment plan was working. During this trial period Brayden was diagnosed with a very rare genetic disorder, CK Syndrome. Unfortunately, with CK being as rare as it is, doctors and researchers have very little information. Fortunately, Brayden had his last seizure at the beginning of October 2017. Since then, Brayden has made slow progress, while all 12 services manage and maintain his health very closely.